AFTER years of illness and hospitalisation, Tweed teenager Emily Dixon finally has an answer for her pain but needs the communities help to raise better awareness.

Having being diagnosed with a primary immune deficiency, or CVID, five years ago, Emily's mother Gail Dixon said she was asking Tweed schools to get involved with supporting the Immune Deficiency Foundation of Australia.

"The primary immune condition nine times out of ten needs some catalyst to set it off,” Mrs Dixon said.

"Five years ago, Em had an autoimmune which means your body is attacking itself and she had to have chemotherapy and massive doses of steroids to help with that. Looking back that was probably to the catalyst to start this off.”

Emily, 18, said she was relieved to have an answer to why she's always sick but now she wanted to do more.

"We'd never heard of (the condition) until I was diagnosed and we thought there must be plenty of people that have got this but no one is helping them,” Emily said.

"I think in my age group, aged 18 to 25-years-old, there's only 20 people in Australia that has this sort of category of it.

I'm top of the scale but I'm better off than some other people with it.”

Mrs Dixon said to help raise awareness for the CVID Tweed schools are invited to hold a Zebra Day, in recognition of the condition where not all diagnosis are the same.

"People with CVID are known as zebras due to the fact that no two zebra stripes are the same and neither are the symptoms of patients with CVID,” Mrs Dixon said.

Six schools have decided to host Zebra Day, where children can dress in black and white at school for a gold coin donation.

"The primary immune awareness day falls over the school holidays, so we've given the schools the choice when to hold their day,” Mrs Dixon said.

"The longer it lasts, the more people are going to talk about it.”

Having worked for the Department of Education, Mrs Dixon said she approached the Immune Deficiency Foundation of Australia with the idea of ho

"This is the first Zebra Day ever, so for six schools to come on board for the first time ever, I'm happy with that.

"All the funds are going to the immune foundation of Australia and they support patients and support education.

Terranora Public School, Tweed Heads South Public School, Coolangatta State School, Tweed River High School, Tweed Heads Public School and Lindisfarne Anglican Grammar School will all be hosting Zebra Day.

For more information about CIVID or Emily's journey, visit www.allergy immunology.org.au/personal-stories/cvid-emily-s-story.